With Prostate Cancer, Is It Better Not To Know?

This is TALK OF THE NATION. I'm Neal Conan in Washington. For years, many doctors questioned the value of the PSA screening test for prostate cancer. Yes, it can catch dangerous cancers and save lives, but last week a federal task force recommended against routine PSA tests.

The panel concluded that too often the blood test leads to unnecessary procedures that can leave patients impotent, incontinent or both. Essentially, the panel concludes, that men are better off not knowing. Some experts cheered, others were outraged.

So men, do you want to know? 800-989-8255. Email us, talk@npr.org. You can also join the conversation at npr.org, our website. Later in the program, President Obama's former car czar, Steven Rattner, joins us to talk about the politics of the auto bailout and private capital. But first, NPR health and science correspondent Richard Knox joins us from his home in Dorchester, Massachusetts, and nice to have you with us again.

RICHARD KNOX, BYLINE: Thanks, Neal.

CONAN: And as I understand it, this is a bit(ph) a question of psychology. Every year, tens of thousands of men who hear the word cancer in their diagnosis decide they have to do something, to get surgery or radiation, even though the great majority of those cancers are not dangerous.

KNOX: Yeah, well, it's understandable. Nobody likes to hear a cancer diagnosis. And I think for a long, long time, people have been conditioned to think that cancer is very often deadly. That has been changing in recent years, but you know, it's very ingrained in our thinking. Also, I think very ingrained is the notion that it needs to be caught early and that if it is caught early, you have the best chance of cure.

So there's a great drive to catching something early, and PSA has been thought for more than two decades as a good way of doing it.

CONAN: Yet even the person who invented the test said he wished he hadn't done it, it's counterproductive.

KNOX: Well, there's a lot of counter-arguments for it that have been emerging over the recent years, as we've had results of more studies that do emphasize the harms that come with it. You have to do an awful lot of screening to save a life, and that's one of the big problems. It's on the one hand you are causing a number of men to undergo screening for - you know, they'll get false alarms, they will have a positive that turns out not to be cancer, but it's got to be investigated.

Other men will get a true positive, meaning they do have a cancer, found on biopsy, but it turns out many of those cancers don't need to be treated, which is hard for a lot of people to understand, but the evidence shows that most cancers found through PSAs, as most cancers are these days, would not have gone on to kill the guy if nothing had been done.

CONAN: So he would die with it but not from it.

KNOX: Yeah, die of something else.

CONAN: So it is not in human nature, as you suggest, to find out you've got cancer and say, well, no big deal.

KNOX: No, not at all, and I think that's part of the problem that many doctors and many patients are struggling with now is that it's very counterintuitive. And the other part of the problem is sort of even deeper than that and less specific to prostate cancer. It's the nature of scientific evidence. And, you know, I think we're going to be talking about this more with a fellow that I interviewed last week for a piece that aired on Monday, Dr. Arkes, and he can help us understand more, I think, about why that's the case.

But basically, people pay a lot more attention to anecdotes, to stories that they hear, to people they know who've been diagnosed with prostate cancer and now are fine and therefore it must have been the PSA that is responsible or gets the credit, and very much less attention is paid to the statistics that say wait a minute, it may not have been the PSA at all, and PSA testing may have a lot of mischief, as you mentioned before.

CONAN: Well, you mentioned Hal Arkes, professor of psychology at Ohio State University, he's with us right now from the studios of our member station WOSU in Columbus. And nice to have you with us.

HAL ARKES: Nice to be here.

CONAN: And that - we hear the story, it's not necessarily just of a famous person like Warren Buffett or somebody like that, but it could be the postman, it could be our brother-in-law, somebody like that, and that anecdote is more persuasive than a raft of scientific evidence.

ARKES: Unfortunately that's the case. A raft of scientific evidence is boring, and it causes your eyes to glaze over, and the numbers start looking pretty daunting. But if your mailman's brother is standing there and tells you about the PSA test he had and the fact that it was positive, and he had a radical prostatectomy, and he's doing fine now, that piece of anecdotal evidence seems to overwhelm all the numerical data.

There are many examples of this in psychology. One that I often talk about in my class occurred about 20 years ago, when a young child, Baby Jessica, fell down a well, an abandoned well in Texas. And a very large amount of money was spent rescuing the woman, as it should have been spent.

Somebody pointed out that if all the money that had been spent to rescue her had been used to cap all the abandoned wells in Texas, a lot more than one person would have been saved, but it would have been very hard to ask people to spend money for that. It's much easier to ask people to spend money for an identifiable victim.

And that's the power of the anecdote. It shows that when you actually know the person or know their name, you're much more willing to do something about it and to pay attention to that evidence than if you have a bunch of statistics.

CONAN: So the federal panel is effectively trying another tack: If you don't know you've got cancer, you're not going to do anything about it.

ARKES: Well, now, the federal panel has a couple of problems. One is that they presented the evidence in statistical form, as most of the professionals who would read the report would like it to be presented, and that evidence is persuasive to many professionals, but to the ordinary citizen who is trying to decide what to do about a PSA test, those statistics really can't compete, first with actual anecdote, the person they know, and it's going to be difficult for the individual to appreciate a lot of that data because you have to understand the various numbers of things like control groups and other experimental nice points that most of the people won't be able to understand.

CONAN: And Richard Knox, give us some help on the numbers here. How many - as I understand it, it's up to maybe 2,800 lives a year might be saved by PSA screening, and how many people who have - I gather it's tens of thousands who have these procedures.

KNOX: Well, let's start with the basic fact that most men over the age of 50 will get a PSA test every year, about 70 percent of them, I think, and that, you know, millions and millions of guys are getting the test, and they have been for 20 years. And so they think it's, you know, pretty indispensible, and so do their doctors.

Out of the people who get it, many will get a positive result, and most of them who get a positive result do not have prostate cancer at all. When cancer is found, most of the time it would never kill, and - but 90 percent of the time, if it's found, it will be treated. And maybe up to a third of the people, of the men who have prostate cancer treatment, prostatectomy, radiotherapy, hormone therapy and so on, will end up with lasting complications.

The best evidence the U.S. Preventative Services Task Force found, and they looked at five big studies, the best comes out of Europe, 180,000 men or so followed for 10 years or more, and have found that for every thousand of them who got screened annually, about one might have his life saved by the fact that he got screened and treated early.

And that's not - doesn't - it's not nearly as good as screening for colonoscopy, which is like two to 10 times as high. So the bottom line is a lot of men are getting screened, a lot of men are getting treated, a lot of men are getting harmed, and relatively few men are actually being saved.

You mentioned 2,800 lives possibly saved, that's out of 28,000 men who will die of prostate cancer this year, and you know, I think this is where it begins - it gets a little tricky: 2,800 lives saved is 2,800 lives saved. I mean if you're one of those 2,800 guys, you're grateful. But there are probably hundreds of thousands of men who are screened and harmed in one way or the other because of that screening to buy that benefit.

CONAN: So men, do you want to know? 800-989-8255. Email talk@npr.org. Let's start with Rick, and Rick's on the line with us from Mill Valley in California.

RICK: Yeah, hi, good afternoon. I am a survivor. I was diagnosed with stage three. I went through over two years of hormone therapy, as well as radiation, and I serve on the advocates' committee at UCSF. I think there are a couple of points that need to be made here. The first is while the PSA test is imperfect, it's about the best that we've got right now. And the test is about information. It's not about treatment.

And the panel seemed to miss that. Where the panel should be focused and the critics should be focused is improving the communication between the doctor and the patient so the patient makes the right decision with the information that they have. They're not being forced into treatment if they have very little cancer. They can opt for active surveillance, they can watch the cancer.

But if we take the test away and we discourage, somebody like myself would not have been tested, and I have many, many really good friends who have worse cancer than I do, they would not have been tested. And by the time the disease is symptomatic, because most of the time prostate cancer is asymptomatic, it's too late, and we lose these men.

There are 40,000 men a year who - roughly 30,000 to 40,000 men a year who are diagnosed with stage three or worse prostate cancer. And by encouraging men not to test, we are putting these men, including people like myself, at very, very severe risk. The test is about information, it's not about treatment.

CONAN: Thank you for that, and you are of course correct. But Hal Arkes, that information once received tends to be valued - tends to be - because it's the word cancer.

ARKES: That's right, but there's also something I would say to the gentleman with regard to the fact that the test does or doesn't save the lives of men. In the studies that have been done, when you compare the group that did not get screened to the group that did get screened, the number of deaths from prostate cancer is about equivalent. So therefore the screening really doesn't have much of the benefit that this gentleman would like it to have.

It has some serious harms, as Mr. Knox pointed out, and one of the harms is that there's a certain fraction of men who will be diagnosed with the PSA test as having cancer, and they'll undergo a radical prostatectomy, and that has a mortality rate too. Even though these men are really getting useless surgery, they are nevertheless being subjected to a dangerous operation.

So if the best we can do is to compare those who don't get screened and look at their prostate cancer mortality rate and those who do get screened, you really don't see much of the benefit, and everybody agrees that there's plenty of harms.

CONAN: We're talking about the latest recommendation against getting a PSA test for prostate cancer. In a few minutes, we'll talk with a primary care physician about the conversation she's having with her patients, and of course more of your calls. Men, do you want to know? 800-989-8255. Email us, talk@npr.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

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CONAN: This is TALK OF THE NATION, from NPR News. I'm Neal Conan. We're talking about cancer screening and the latest recommendation that healthy men should skip the PSA blood test for prostate cancer. Essentially, a federal panel found you're better off not knowing. The potential harm, they found, outweighs the benefits.

So men, do you want to know? 800-989-8255. Email us: talk@npr.org. You can also join the conversation on our website, at npr.org. Click on TALK OF THE NATION. Or chime in on Twitter, @totn. Our guests are NPR health and science correspondent Richard Knox and Hal Arkes. Arkes is professor of psychology at Ohio State University.

And we got several tweets. From Evade: My father and uncle had prostate cancer. So I will want to continue to monitor my prostate health. And Richard Knox, that's sort of a different category. If you're - if there's a reason to be tested, the panel said you should be tested.

KNOX: Well, the panel did not urge that men who had a family history of prostate cancer, as this fellow does, or men who are African-American - who are known to have a higher risk of prostate cancer - that they be treated any differently and that they be offered routine screening, either. That's just because they don't find evidence to support that. They haven't - the studies don't exist, at least the good enough studies don't exist to show that there's a positive benefit from routinely screening those guys.

But I think that gets into a point that Rick raised a minute ago, that, you know, there are men who - for their own reasons, and they have to be respected - really would like to know, and they would like to monitor it. And I think a lot of people feel as though they should have every right to. As the task force says, they know it's going to continue to be offered, and men will continue to ask for it.

The main issue is that they need to be clear about what it can do, what it can't do, the benefits, the harms, and what they might do if they found - if they had a positive PSA.

CONAN: Let's get another caller in. This is Kim with us from Sodus, New York.

KIM: Thank you for taking my call. I appreciate it.

CONAN: Go ahead, please.

KIM: I too am a survivor, and I too, you know, had a father who died from prostate cancer. And - but I also have a lot of older friends who, you know, are being encouraged to go through biopsies because their PSA level is beginning to rise. I have one friend who has been tracking his PSA since the '80s, and he has a few outliers, but there's no real indication that he has any, you know, any cancer.

You know, he has a urologist who is determined to do a biopsy, and, you know, that's an invasive procedure, presents a certain amount of risk. And then at his age, would he really benefit from a radical prostatectomy? You know, I mean, that's what I went through. I was grateful that I did, because I had a second tumor that was ready to metastasize. It did not show up in the biopsy.

You know, so I'm kind of grateful. I had actually gone through experimental ultrasound procedure at the University of Rochester, where they're trying to develop a Doppler-enhanced device that would be able to better monitor potential prostate cancer. And they did find an abnormal tissue area. I knew enough about the imaging science to understand what they - what was going on.

And lo and behold, when they did, you know, do the biopsy of the prostate, a second tumor did show up in approximately that location and was right on the verge of metastasizing.

CONAN: So you're definitely in the life-saved category.

KIM: Yeah, I am, but I have real mixed emotions about - you know, I feel both ways. I think in my particular case, if you look at family history, that's what you really kind of have to look at - I believe, anyway.

CONAN: All right.

KIM: You know, I think there's a lot of unnecessary - I think there's a lot of unnecessary biopsies going on.

CONAN: Kim, thanks...

KIM: And potentially a lot of unnecessary surgeries.

CONAN: Kim, thanks very much for the call, and we're glad they found it.

KIM: Well, thank you. So am I. Thank you very much. Enjoy.

CONAN: Here's an email from Jessica in Portland: My stepfather was diagnosed with elevated PSAs and an early-stage cancer and pretty much flipped out. He began searching for the Holy Grail of cures and began severely restricting his caloric intake, taking bizarre supplements, changed his diet so that he could no longer eat with the rest of his family.

He was obsessed with his relatively benign cancer. C has such a scary connotation, it can unhinge people. For this reason alone, if prostate cancer is not going to negatively impact the life of the patient and harm of treatment would outweigh any benefit, I see no good in freaking people out to the point that they change their lives in entirely unnecessary and counter-beneficial ways.

And Hal Arkes, you were talking about the power of anecdote before. Why don't anecdotes like that also have power?

ARKES: That's an excellent question. I think the anecdotes like that are going to be on the radio a lot less frequently than the prior couple of listeners who responded. They have stories to tell that make it sound like their lives were saved, and the people whose lives weren't saved aren't going to be heard much from when it comes time for a controversy like this.

I think the prior person from New York brought up an excellent point. I had some emails, one from a gentleman in Maine who's had six biopsies. He's complaining about being a pin cushion for his urologist and surgeon. And now that he's 79, he and the urologist have decided enough is enough, and they're not going to do it anymore.

This man has gone through quite a bit, and the PSA test keeps coming back positive, and they keep poking him and not finding anything. So these are those negative stories. But I get emails about them, but I don't hear them much on the radio.

CONAN: Joining us now is Dr. Mary McNaughton-Collins, a primary care physician at Massachusetts General Hospital and associate professor of medicine at Harvard Medical School. She joins us from their studios in Boston. It's good of you to be with us today.

MARY MCNAUGHTON-COLLINS: Thank you. Great to be here.

CONAN: And I'm assuming this is an important conversation that you're now having with your patients.

MCNAUGHTON-COLLINS: I am indeed, and I have been for the last 15 years or so in practice, as this has been pretty controversial for a long time now.

CONAN: But what about this recommendation now? Are men asking you about it?

MCNAUGHTON-COLLINS: Yes. And I think that your question earlier about skip the test or do you want to know, I think that the most important thing is that each man is informed about the test and about its potential for benefit and about its known harms, and that we continue to have that conversation.

When I have that conversation with men in my clinic over at MGH, where I'm a primary care doc, I find that most men choose not to have the PSA once they're fully informed about all aspects of the test. However, I do still have some who want it, and I think that that's the right thing for them. They head into it well-informed, and that works, too.

So I think that we still need to be having these discussions on a one-on-one basis with our patients, and I think the primary care doc is in an excellent position to help the patients understand the task force, all these statistics and all these numbers, that's what you've got a primary care doc for. I'm there to help put those numbers into some comfortable terms that patients can understand and hear their preferences and values about what their thoughts are regarding the tradeoffs.

CONAN: What are some of the best questions you get from your patients?

MCNAUGHTON-COLLINS: So, if you're not sure if this is going to help me, you know, why would I want to get into this quagmire? So I do have some folks with some healthy skepticism. On the other hand, I would actually say a few years ago, it was a little bit more difficult to have this conversation. And now I think the press - and you folks included - are going a great job helping the American public to understand the uncertainty in medicine today.

We have a lot of uncertainty, and I think the public deserves to ask questions and be tough on us when we offer a test or a treatment, no matter what it is. And so I would encourage that. I think it's a change that's been going on now. I think terms such as over-diagnosis and overtreatment, false positives, I find more and more of my patients in clinics seem to understand those terms and want to know more about it.

CONAN: And you said most of your patients, once you've had the conversation, decide let's skip it. These are healthy men you were talking about.

MCNAUGHTON-COLLINS: Exactly. That's where screening comes in. And I think as a primary care physician, the onus is on us, when we have a health man sitting in front of us who doesn't have any symptoms - I mean, that's what screening involves, a healthy person. The onus is on me to make sure that I have the evidence, the science to support a test that I'm going to recommend and then, you know, follow up on.

So I really do think that the onus is on the physician to be certain that they have good evidence of what they're doing is causing more good than harm, and in prostate cancer screening, we really just don't have that evidence right now that we're doing men more good than harm.

CONAN: Do you have any patients who decline the test, and then it turned out to develop prostate cancer and died from it?

MCNAUGHTON-COLLINS: I do know of many cases. I've heard a lot about that, concerns about someone who wasn't screened and then went to a new primary care physician, and that physician screened the person. And I think that that's a lot of - there's a lot of fear-mongering about med-mal that can scare some primary physicians. But again, I think there's a paradigm shift, I'm hoping, in medicine.

I think we're hearing more about campaigns such as Choose Wisely from the American Board of Internal Medicine Foundation and ARC, which is suggesting that patients ask questions. So I do think that there's been a lot of concern that that could happen, but we've got more evidence now. And these two big trials that came out in 2009 that we're now all commenting on now in 2012, it's very exciting to have some evidence to discuss, because before that, we had these same controversies.

You had the enthusiasts for prostate cancer screening. You had the skeptics. But we were all arguing about sort of insufficient evidence. And now the trials aren't perfect, but it does give us a little bit more evidence to work with.

CONAN: Interesting email question from Amy(ph): I'm a practicing physician and feel conflicted. I care for my patients. However, we need medical liability reform. If we don't do the screening, we'll be sued even if we communicate well with our patients. If we do screen, then we're now harming our patients.

MCNAUGHTON-COLLINS: I think that's a concern that many primary care physicians have. But I do think that we should not be, as primary care physicians, worried about the medical malpractice implications as long as we are having conversations with our patients and document that. I think informed medical decision-making is probably the best protection against a medical malpractice suit.

CONAN: Here's an email from Dustin(ph) in Grand Rapids: My grandfather recently passed as a result of prostate cancer. His father also passed of the disease. My doctor suggested that due to this family history, we should begin screenings at the age of 40, which is later this year. I'm not comfortable with that idea. But having witnessed my grandfather's pain and suffering toward the end, well, I'm not comfortable with that either. I'm confused and unsure of what to do or tell my doctor.

And, Dr. McNaughton-Collins, I know you can't diagnose on the radio, but I'm sure you can sympathize with this person's plight.

MCNAUGHTON-COLLINS: Oh, exactly. And the best part, I would offer reassurance right off the bat, that there's time. So this conversation about screening at 40 doesn't have to happen right when this gentleman turns 40. And he's got plenty of time to become well informed. And that's an excellent part about shared decision-making along a topic like this. There's a lot of time on this man's side to get the information that he needs to make sure he's comfortable with it and that he also gets accurate information that's unbiased and understandable.

And then what's important is to know his preferences. There could be someone just like him who has that same family history and wants that test done at age 39, you know? And so we have men who, faced with these same family histories, the same pedigrees, come down with different preferences and values. And again, the onus is on the PCP to ask the patient how they feel about these numbers that we're giving them.

CONAN: PCP, the primary care physician, which is what...

MCNAUGHTON-COLLINS: Oh, yes, indeed.

CONAN: ...Dr. Mary McNaughton-Collins is when she works at Massachusetts General Hospital, also an associate professor of medicine at Harvard Medical School. Also with us is Hal Arkes, professor of psychology at Ohio State University, who co-wrote an article on the prostate cancer screening controversy for the journal Psychological Science; and our own Richard Knox, NPR health and science correspondent. You're listening to TALK OF THE NATION from NPR News.

Let's go next to Ed(ph), and Ed is on the line with us from Gray in Tennessee.

ED: Hi.

CONAN: Go ahead, please.

ED: This is Ed.

CONAN: Yeah.

ED: And I have a story to tell you about my cancer. It was way back in the mid-'90s. And I was having trouble with holding my water, especially in the morning, and I'd have to urinate every half - three quarters of an hour. And I went to the family doctor, told him my problem. He suggested I go see a urologist. I went there. Urologist did a PSA, if I recall. The number was high. He did some ultrasound of the prostate, many biopsies, that the ultrasound showed some - something that wasn't right.

After the biopsy, it proved that there was no problem. And - but still, I was having trouble holding my water. I changed urologist, who did the same thing a couple of times. And he decided that it wasn't the prostate after all, but it could have been the bladder. So he took a scope and looked inside the bladder and found bladder cancer.

CONAN: Mm-hmm.

ED: And so far as I'm concerned, I had a problem, no doubt about it. It couldn't be diagnosed or - because it was prostate cancer, but yet all of the indicators seemed that it was prostate cancer, and it turned out to be bladder cancer. They tried cutting the polyps out, and they would grow faster than they could cut them out. And I ended up going to Brigham and Women's in Boston and having the bladder and prostate taken out. They put a new imitation bladder in me called an Indiana pouch, and that was 18 years ago, and I've had no trouble since.

CONAN: Well, I'm glad it all worked out, Ed. And it's important to remember, boy, it could be complicated. It's not something...

ED: Yes, it can be. Very, very.

CONAN: Yeah.

ED: And it's a - apparently, it can also be easy to miss. Just because a PSA shows you have problem, it isn't necessarily the prostate. And - but I got real lucky, and I've had no trouble. It was 18, 19 years ago this coming December, so...

CONAN: Congratulations, Ed. Thanks very much. Hal Arkes, I wanted to go back to you. In terms of the psychology, are there better ways to present the information that would be, maybe, as persuasive as a good anecdote?

ARKES: In our article, we suggested one. Actually, we suggest two. I think the way that I would recommend would be pictorially. That is, in our article, we have an imaginary two auditoriums. One has a thousand men who are screened for prostate cancer, and the other auditorium has a thousand men who are not.

And then what we did is we used colored dots to show the number of men who died from prostate cancer in each of these two groups - screened and not screened - and the number of men who had negative side effects such as incontinence or impotence. And we, by showing these two auditoriums filled with a thousand men, side by side, we make it easy for people to visually compare the benefits and harms of screening. I think of the task force that had one those pictorial representations. It would have been so much easier for the lay public to understand whether or not PSA screening is good or bad for them. So that's one thing I'd recommend.

The second thing we use is called a fact box, where we just have the side-by-side presentation of each of the benefits of screening and not screening and each of the harms of screening and not screening. I don't think that's quite as powerful as the pictorial representation, but I think that would have helped as well. I think the dry statistics that are presented in the report are too opaque for many people to understand well.

CONAN: Hal Arkes, thanks very much for your time today. We appreciate it.

ARKES: Nice to be here. Thanks for inviting me.

CONAN: Hal Arkes at Ohio State University. Our thanks as well to Dr. Mary McNaughton-Collins of the Massachusetts General Hospital, also with us from the studios of Harvard Medical School. Thanks for your time.

MCNAUGHTON-COLLINS: Thank you.

CONAN: And, of course, to Richard Knox, NPR's health and science correspondent, with us from Dorchester in Massachusetts. Good to talk with you again, Richard. When we come back, we'll be talking with President Obama's former car czar. Well, the car bailout has turned into a controversy. Stay with us. This is NPR News. Transcript provided by NPR, Copyright NPR.